Good morning and thank you all for your support! We are just hanging out at home and trying to adjust to the medication schedule and having a urine bag with a really long tube attached to Brianna. That presented some difficulty last night but we will get it all figured out. She is very uncomfortable from the catheter staying inside of her but can only take Tylenol. I don’t know what your experience is with Tylenol but it seems to take at least a half hour to “work”, then barely takes pain away for a short while. Ibuprofen works better but she will never be able to have that again. We have learned that the headaches Brianna has been having for quite some time now were caused by her extremely high blood pressure. But when I took her to her pediatrician about the headaches, she told me to give her Ibuprofen every morning and in regular doses throughout the day to prevent the headaches. I was not comfortable giving her that much medication, so I just continued to give Ibuprofen as needed, after she complained of a bad headache. Her headaches presented on a daily basis, so she received Ibuprofen at school for it quite often. We now know that damaged her kidneys further! I am very upset with her pediatrician for not thoroughly looking into the cause of her headaches. She referred us to a Neurologist, but never did any labs to check for anything that could be causing the headaches. Had she taken labs or her blood pressure in her office in October, she would have known her kidneys were failing, and definitely NOT to give her Ibuprofen! We would have know that much sooner there was a problem and her kidneys may have had a chance at recovering.
Another very disturbing fact is that her oncologist never ordered any lab work to check her kidneys during her yearly check up there. Every year Brianna has received an MRI of her pelvis, CT of her lungs and Ultrasound of her abdomen. She has also had her blood drawn and tested for I don’t know what now at each visit but we now have learned that her kidney function was never part of the lab work. What?! Why not????!!! It is common for a child with a reconstructed bladder to have kidney issues down the road. Hello?????? Why didn’t anyone perform the correct tests??? I am just livid about this! My baby is suffering and her kidney function is 25% and the damage is non-reversible at this point because nobody did their jobs correctly! I am sickened by the incompetence in the healthcare field! Even as recent as her hospital stay, a few days ago I told the nurse she was in pain and she asked me if I would like her to bring Brianna some Ibuprofen! I said “Are you kidding”? She can’t have that! Go read her chart and learn something! And, while she was being transported in the ambulance from St. Lukes to Children’s Hospital, Brianna’s arm was spotted and turning purple. Brianna was hurting and pointed that out to the paramedic. The paramedic said “oh, are you cold. Would you like me to turn up the heat in here”? I looked closely and said ” you are squeezing the heck out of her arm still with that blood pressure cuff”. She said “No, I shut that off….oops! I guess I didn’t, sorry! You can just say that dumb blonde woman didn’t know what she was doing”. UGH! Really? Are their shifts too long? Have they been awake too long or are they just that careless? We didn’t need any added problems than we were already facing!
Anyway, Brianna is in bed, taking her meds and watching TV. She has never been able to swallow a pill but seems like a pro now! She is looking forward to a visitor later. Please feel free to write to her any time through this website. Thank you!